Posted , 8 users are following.
hello
I have been suffering with several different symptoms thats making me feel like im loosing my mind, the whole right side of my face feels like its full of fur, it burns, my eye gets red and feels like its on fire. i can wash and shave my face and none of this matters, my doc has tried prednisone with no success and now im on topiramate 25mg, i have only been on this for a week so have not seen any improvement but with all the researche ive been doing i have not seen anything thats given me any hope. does anyone have any info they can share with me please.? I know practically nothing about this disease and the waiting list to see a neurologist is long. not sure how much more I can take. Thanks to anyone who can help.
0 likes, 17 replies
karen36710 madeleine31271
Posted
Tell me more about where you are etc
madeleine31271 karen36710
Posted
Jeej madeleine31271
Posted
Jeej madeleine31271
Posted
karen36710 madeleine31271
Posted
angiegirl madeleine31271
Posted
Ask to see a Neurologyst and get a diagnosis from them. They will probably start you on a more regally used drug. Do it now , don't wait to long.
lee12629 madeleine31271
Posted
lee12629
Posted
Shes in the U.S. frankly i don't know why do many suffer before trying a procedure.
lee12629
Posted
alicot lee12629
Posted
Yeah, same with the Radiofrequency ...they target the nerve only.
a part of your face remains a bit numb. So you have to live with that but hey, it's a trade off.
marilyn49807 madeleine31271
Posted
I'm so sorry you are having such a horrific time. My face on right side was so horrific but doctor put me on gabipinton 300mg in morn w/ extra strength Tylenol until pain easez off.,600mg gabapinton @3, 600mg bwfore bed =1500 a day. I have been on gabapinton since 1year and 6months. I know that God has taken away so much of my pain. I tried to ease off of meds but too soon. I will try again in May next ywar. I will pray for you. I think surgery is too risky and doesn't take care of problem. Pray and ask God to help you and He will. I pray He touches your face right now and takes away your suffering. In Jesus name. Amen...
madeleine31271 marilyn49807
Posted
I've been told that it's extremely difficult to find the effected nerve and effected blood blood vessel in order to do mvd. Maybe I've been misinformed.or maybe eacc case is different. Being in the medical field myself I understand that the brain is the most complex organ in th human body
alicot madeleine31271
Posted
You have every right to feel horrible about this. If in fact it IS TN, find a neurological surgeon immediately and have a procedure done. There are several to choose from. I had Radiofrequency surgery and it got rid of the pain immediately for a number of years. Sadly it does come back BUT with a supportive team/doc they will get you in immediately and zap that nerve again. Radiofrequency can be done over and over. It is minimally invasive and I am up and functional right away.
The neurologist will put you on a drug that many find to be unacceptable...makes them zombielike. Some are OK with the drug so?? And there are several drug choices. Absolutely do the on line research so you have an idea of what your options are. I was lucky to find an experienced neuro surgeon who has done lots and lots of these surgeries. An experienced doc makes a huge difference. I found him by doing research on line.
Some neurologists are really good about TN pain and some are not but they CAN prescribe an anti-seizure drug that can ease the pain until you get a surgeon (unless, of course, you are OK with the drug.)
I am so sorry you are suffering. Believe me, everyone here understands! The people who have had successful surgeries tend to leave this forum but there are many successes. I am one of them.
lee12629 alicot
Posted
madeleine31271 alicot
Posted
Thank you, I will do my home work and look at all of the many advices I've read in the forum, you have no idea how much this has helped me, this is a scary time for me and hearing some positive responses has helped, before this everything I've read was negative so my imagination got the best of me.
Join this discussion or start a new one?
New discussion Reply